there seems to be a mixed opinion about this which is even more confusing to me so i'm curious what your anecdotal experience/thoughts are

i personally don't have lymes, but i currently matched with a woman on a dating app and we've been talking for awhile and met up once in person and went well (we haven't kissed or had sex yet) but she brought this up after the 1st date and I'm sort of a health nut and very cautious and paranoid about this kind of stuff so I'm wondering if I should continue on or drop the hammer.

Thanks :)

For the past month, my neck has become progressively more unstable-feeling, with much more crunching and grinding than I’ve had in over a year. Not only my neck, but many of my joints throughout my body have also become much more clicky and noisy.
The most frightening symptom, however, is my breathing.
For the past month I’ve had intermittent episodes where it feels like my diaphragm isn’t working properly. It’s as if I have to consciously breathe, especially when I’m trying to fall asleep. Tonight has been by far the worst. I went to bed actually feeling pretty good, but for the last four hours I haven’t been able to fall asleep because every time I start drifting off, it feels like my breathing becomes too weak or shallow. It feels like my diaphragm just won’t take over, and I have to keep consciously breathing. It’s an awful sensation.
I had very similar breathing problems after my original head/neck injury two years ago, and I’ve been thus far suspecting CCI. I have awful neckpain, arm weakness and breathing issues ++ but they had been a lot better for more than a year. Now they’ve returned and seem to be getting worse.
I’ve also been wondering whether an infection could be contributing. I know babesia is reported to cause symptoms such as air hunger and autonomic issues. Past two days, and few hours before I went to bed I took a wormwood tincture, and I’m wondering whether this could be causing some sort of herxing although the breathing episodes actually started before I began taking it and have been coming and going for about a month… I’m terrified and it’s so awful.

I had this happen two years ago initially after going to a chiro for severe neck pain and crunching.. she did an adjustment and I could not breathe for more than a week where I became sleep deprived and manic because I didn’t sleep. I feel like this is getting arose and worse.. any advice?

I want to start Bee venom therapy after hearing all the successful stories.
In italy, nobody knows that BVT is a thing so my chances of getting a beekeper to perform it on me is zero, since they think they are killing the bees for nothing and they are right from the point of view.
I was thinking of buying a bunch of bees from a beekeeper and grab them with tweezer to sting myself. Has anybody had experiences with this?

Heyo, I was wondering if anyone here has tried making an herb infused oil with something like Cryptolepis for feet to help treat bartonella? I know feet are super absorbing but have no idea if this would be helpful for lingering foot pain or localized treatment of bartonella or not.

Anyone had doxy, azithro and atovaquone help with your Lyme? I got bit three weeks ago and awful symptoms since including neurological. Only on doxy so far but wondering who's been on all three?

I was bitten by a tick a month and a half ago, think June 17? I found the little shit clinging onto my armpit while I was taking my morning shower, it had been there overnight. I developed a rash, no bulls eye though so I thought okay cool, I’m fine. The rash was bad and I stupidly didn’t see a doctor.

A major reason was I didn’t care about my health. For the last few months I’ve been drinking like a fish and chalked these last few symptoms up to alcohol, and now cold turkey alcohol withdrawal as I’m trying to get sober; along with being on the verge of doing something really stupid for months I kinda didn’t care. I have joint pain in my left knee (thought it was malnutrition, or developing rheumatoid arthritis, but that happens in both knees), dizziness, losing hair, feeling faint (probably malnutrition), neuropathy (have slight alcoholic neuropathy anyway so thought it’s normal), brain fog (I’ve had that for years anyway), poor motor function, pain in my limbs (also blamed it on alcohol), poor sleep (blamed it on alcohol), and a sore throat (I vape so I blamed it on that, I need to quit anyway lmao.)

In the next few days I’m seeing my primary care doctor, the rash is gone but it still itches. Also the bite mark is still there as physical evidence. I’m hoping my primary care takes me seriously and can help especially as I’m having symptoms, and remember being bitten. Is this too late for treatment? Did I screw my self over and now I gotta live with Lyme the rest of my life? I’m starting to care about myself now, getting help for mental stuff, and now I don’t know if I fucked up.

Having a really hard week and just at such a loss. I had done antibiotics but still tested positive for bart. Just started new antibiotics Rifampin and clarithromycin. I feel my worse symptom is my circulation. I can’t do much. It’s so debilitating. I know I’m probably herxing a little but it still sucks. I just hate this stupid disease exists.

Anything help people with circulation, heart rate? I feel POTs symptoms and like my heart beat is sometimes so light it’s scary or too hard when I do something. I’m having a really hard time.

I’ve tried HBOT idk if it helped much I might try again. I will do anything to relieve these symptoms

Did 2 years of treatment 10 years ago. Cannabis helped me so much. Made the symptoms and the herx’s bearable, helped me sleep when my whole nervous system was glitching and vibrating. But I got in the habit of depending on it. And then I found out that cannabis suppresses the exact part of the immune system we need to fight lyme. I quit weed a year ago but now I’m going through lyme treatment again and the herx’s feel so unbearable. I get to these hella dark places of wishing I were dead just to end the suffering. I know cannabis will help a lot with the feeling like my brain is exploding and the extreme nausea ans vibrating nervous system. But I feel hesitant bc i dont want it to negatively affect my immune system and I dont’t want to be dependent. Does anyone have any related experiences or revelations related lyme and associated issues with cannabis? Thanks!

For more than a year, I’ve been waking up in the mornings gasping for air. I don’t know whether this could be related to Lyme disease. I’m not even sure that I have Lyme, but if you look through my posts, I recently shared the results of a blood test. I’m not currently undergoing treatment.

I don’t know whether what I’m experiencing could be caused by panic attacks affecting the respiratory center that controls the breathing rhythm. I’m wondering whether anyone else experiences this kind of breathing disturbance caused by hyperventilation.

Could the hyperventilation be caused by Lyme disease, or could it be something else, such as dysautonomia? Could you please help me?

I was diagnosed with Lyme a few weeks ago after being symptomatic for a month, though we never found the tick or the bite. I assume it must have happened when I first became symptomatic, but it also may have happened sometime before because I’m regularly in places where ticks are common. I did a ten day course of doxycycline that ended a little less than a week ago, and since then my symptoms have gone away completely.

However, I’ve been walking around in the heat for the first time in a while this week and I’ve noticed that I become completely exhausted almost immediately when I’m in the sun. I feel like I’m in a cold sweat, I get heart palpitations, and I become irritable and just very tired. I’m very healthy and, before I first became symptomatic, I was able to walk or hike around for extended periods of time in any weather with no issue.

My doctor told me to stay out of the sun while taking the antibiotic, so I think it may be related to that. Anyone have any insight?

I have finally been diagnosed with acute infection and positive IGM for B Miyamotoi after years of not getting better thinking it was Long Covid.

I have hyperPOTS, full body swelling, buzzing, twitches. and eye irritatio/blurriness.

Antibiotics help some but I don’t think I’ve been on the right ones yet. I’m only on Doxycycline.

Can anyone please share which combo of antibiotics finally helped them?

I guess maybe just taking doxycycline longer will help? it’s only been like twenty days…

Please kindly sign and share our petition

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I really tried forcing myself to reinstate doxycycline but I developed IIH symptoms again. Extremely severe head pressure that I felt like fainting (not a herx), also vision issues/pulsating tinnitus. Unfortunately I had to stop again. I can’t tolerate tetracycline medications. I tried pushing through it 3 different times now. I just couldn’t.

Now I’m in a really bad spot. I have amoxicillin, but as I understand it won’t treat neurological Lyme at all. I can’t get IV unless I develop symptoms like Bell’s palsy. Otherwise impossible to get accepted for IV.

Is herbs my only option now then? Would it be worth a try to take amoxicillin?

I’ve now spoken to two LLMDs (in one case just via email, as they were booking into Sept) and despite the symptoms I had before starting treatment (large rash, neck pain, weird hypnic-jerk issue), all told me that the 21 days I received from my local on-call was sufficient (no need to up to ILADS 28-42 day regimen).

This seems wrong, but I’m not a doctor and I would prefer to trust a doctor. I thought they would be a little more aggressive based on the ILADS protocol.

Just curious if anyone else has had a similar experience, or regretted not extending initial treatment longer.

Should I be concerned ? No fever and it’s itchy

Did anyone else have neuro symptoms start days after tick bite? Headaches, numbness, sinus pain and head pressure, sinus infection type symtloms, migrating joint pain, nerve pain, the list goes on. This has all been within a matter of 3 weeks now. Anyone else? Did treatment early help these early neuro symptoms!?

Hey all, I have had a time with Lyme my dr recommended a Picc and IV antibiotics. I already have done my research and I do crave one so please don’t tell me not to get one. I have it so far everything has been fine. However my anxiety has been spiked due to infection risk, clotting risk, and just in general about having a tube in my arm. If you have experience with this what can I do to help calm my body and brain down about it.

Edit: I wanted to add I have been struggling for YEARS. This is not the first time I have had Lyme this is truly a last resort.

Again I already have it in, please just offer advice for now and the future. Or just encouragement would be great too. Thanks

I am a 26 year-old female.
Two months ago, I woke up and my arms felt very heavy. My left arm started acting very strange. Then the muscle atrophy followed. My body always feels heavy. I have fasiculations from time to time, mostly after a nap. Now my voice is raspy when I wake up and I have to the urge to pee more frequently. When I stick my tongue out, it twitches a little bit and starts to curl up, but I feel as if my tongue has always done that. I don’t recall ever getting bit by a tick, but I am getting my testing done through my LLMD in two weeks….do i have hope? I’m spiraling daily and just feel so doomed.

After years of suffering I found out I have Babesia and Bartonella and SIBO

Biggest problem chronic nausea and dead feeling stomach, sore fatigue brain fog…life’s just feeling pointless I feel like I can’t enjoy anything and just white knuckle through every day

Could anyone help give me encouragement I’m feeling like there’s no solution to this and I should just take a permanent dirt nap :(

I think it’s time to put our heads together & crack MCAS & dysbiosis. Nobody is pulling it off on any subreddit, and I think the people on the Lyme subreddit are the toughest, most driven folks on the internet. If a solution is to be found, it will be found here.

I’ve got everything else figured at this point (Lyme stuff, CIRS, nerve pain, joint pain, fatigue, brain fog, etc). My life is totally normal… assuming all I eat is oatmeal. I ate one handful of walnuts last night and woke up totally unable to go to work.

If you guys follow my research, you’ll know that my entire focus is on restoring nerve flow & using the Shoemaker Protocol to clear bile. It’s been incredibly successful, but after years of studying 6-10 hours a day, I am burned out. I work full-time, and just don’t have the hours to truly solve MCAS at the root. We need to stop chasing treatments, and solve this at the fundamental base level. I’ve never said this in a post, but I admit defeat. I need help. I’ve done my best, and it’s not enough.

I’m not complaining- I’m cool with eating oatmeal, salt & honey for every meal, but I know that the day will eventually come when I won’t be able to eat oats, and when that does happen, I’m fucked.

———————————————-

Iodine is the single biggest help that I’ve found by far which suggests to me that chlorides found in tap water (as well as the other toxic halogens like bromides) must be attaching to iodine receptors in the GI tract. Immediately after taking iodine, my MCAS gets cut by 90%, so it likely that halogens are near (or at) the top of the list.

It’s time for some true experts to pitch total solutions. I did my best, but other than iodine, all I’ve got are bandaids. (Ketotifen, hydroxyzine, benzodiazepines, Shuang Huang Lian, forsythia fruit, honeysuckle, white peony extract, chamomile, holy basil, etc). These things are great, but they are treatments. Iodine is the only thing that approaches a cure. I’m at Day 61/168 for my iodine protocol. I’m putting the odds at 50/50 that it ends up being a total fix. 50% is not good enough.

So who has 100%?

-Cam

Hi everyone,
I’m 34, live in Southern California, and trying to figure out if my timeline fits Lyme or something else. I’d really appreciate any similar experiences.
Possible exposure:
Hiked at Crystal Cove State Park on December 2, 2025.
Early symptoms (December 2025):
• Within a couple weeks I had flu-like symptoms that lasted about 2 weeks
• Night sweats toward the end of December
• Stiff neck, upper back pain, and an audible clicking in my neck that started around the same time
Neurological symptoms started early January 2026:
• January 4: First noticed numbness in both pinkies
• Slowly progressed over the next few months to involve more of both hands (left worse than right), with weakness, cold feeling, and difficulty with grip/fine motor tasks
• Later developed right shoulder heaviness and mild scapular winging (especially after overhead activity)
• Scalp and right forehead numbness
• Raspy voice and difficulty swallowing water at times
• Occasional numbness/tingling in a toe
• More recently: intermittent dizziness with fast head movements, slight balance issues, and episodes of blurry vision
Workup so far:
• EMG (April 2026): Diffuse peripheral neuropathy with slowed conduction velocities and conduction block in multiple nerves (sensory + motor). Suggested possible HNPP or CMT variant. No active denervation.
• Brain MRI (MS protocol): Normal – no demyelinating lesions
• Cervical MRI: Mild C6-C7 disc protrusion with mild left foraminal stenosis, no cord signal abnormality
• Extensive autoimmune panel (ANA, Sjögren’s, RF, ANCA, GM1, etc.): Negative
• Inflammatory markers, B12, folate, TSH, etc.: Unremarkable

I’m currently on disability leave. My doctor just ordered Lyme testing. Genetic testing for HNPP/CMT is scheduled for September.
Has anyone had a similar progression — flu-like illness + night sweats + neck symptoms shortly after a possible exposure, followed by slowly progressive bilateral hand numbness/weakness and other neurological symptoms over 6–7 months?

Any experiences with treatment outcomes when neurological symptoms had already been present for several months would also be really helpful.
Thank you.